In Good Times And In Bad Times

I needed to clear up some space on my computer today, so I pulled up a list of the biggest files on my computer. Near the top of the list were a group of movie files with generic names. I clicked on the first one, and it was a video of my son that we made to document his behavior when it was at its worst.

behavior side effects medicine seizure epilepsy father fatherhood

I wasn’t prepared to see the video, and it really unsettled me. Even now, hours later, I’m thinking about the video and how desperate and scared we were. There were no answers for why he was acting the way he way. It could have been side effects of the medicine, or damage from the seizures, or a combination of both, or something else entirely. No one could tell us why it was happening, and no one could tell us if it would get any better.

behavior side effects medicine seizure epilepsy father fatherhood

In the video, he was having one of his typical outbursts. I say typical, but they were typical for where he was, but not typical for the almost five years of life he had before his seizures started. His brain would “go backwards”, as he eloquently put it during one of his lucid moments, and he would start hitting, scratching spitting, and screaming. The picture above was another symptom where his body would take control and he would somersault or flop around on the couch or the floor. The image at the top of this post was of him throwing a toy at me while I filmed the outburst.

On a good day, we would only have a few, short episodes. On a bad day, we’d spend hours holding him down at bedtime. It was agonizing as a parent to see that happen to my child, especially when the outbursts ended with him expressing such remorse for what his body did and, I suspect, terrified that he wasn’t able to control it.

Watching that video, the thoughts that I had lost my son and that his life was going to be nothing more than managing one uncontrollable outburst after another for the rest of his life came rushing back. The feeling of desperation, the praying that there would be some relief, some help for him, some help for us, came back, as well. After a few seconds, I was so overwhelmed that I clicked stop, a luxury I have now that I wish I had back when this was actually happening.

When I got home, I told my wife that I had pulled up the video and that it upset me, and she comforted me like she always does. She asked if I had deleted the videos. I told her I didn’t, but I didn’t tell her why because I didn’t know myself. Am I keeping them to remind me of how hard it was so that I can appreciate where we are now? Are they clinical files incase someone, years from now, can explain to me what they were and why they happened? Do they matter, or should I just wipe them from my hard drive and let Time do the same thing for my memories?

Tonight, I don’t know what I should do with those videos, but I did know what I should do with my son, which is the same thing I’ve done since he was born, in good times and in bad. I laid next to him listening to him suck his fingers as he started to drift off to sleep. I kissed him on the forehead and told him that I loved him more than anything, and that I was lucky to be his father.





Asking The Big Man For A Reason

Most nights, I ask God why this is happening to my son.

We went in for our three-month checkup for the ketogenic diet and also saw our neurologist. The good news is that the diet is helping. The bad news is that his EEG looks worse than it did last time. The good news is that the neurologist thinks it’s because the medicine he was toxic on and that we weaned him off was helping with his seizures but there is another medicine we can try. The bad news is that we’re adding yet another medicine, and that the new medicine has some really scary side effects, especially if it is introduced too quickly.

We knew this was coming. Our neurologist has been mentioning the new medicine for weeks now. We had hoped that, as we weaned off the other medicine, that the diet would have done more. But as his nighttime seizures increased, we slowly started to accept that the diet and the medicine that he was still on wasn’t doing enough. In the end, we opted to give him the new medicine, and his first dose was last night.

My wife is out of town, so it was just me and my son. After I triple checked the literature to check how much to give him, I cut the pill, placed it on the counter, and watched him place it, along with his other pills, in to his mouth, grab the water, and swallow the lot.

We won’t know whether the medicine will work or not for at least weeks, and he won’t be up to the target dose for months. That is, unless the side effects kick in, which would mean we have another set of problems to worry about. But maybe this will be the first medicine out of the 7 we have tried that he won’t have an adverse reaction to.

God and I have a…complicated…relationship. We haven’t always seen eye to eye. Like my biological father, God and I hadn’t really talked in years and I rarely (if ever) talk about either of them. Unlike my biological father, though, He and I started talking again when my son was born. I thanked Him. I thanked Him for blessing me with a healthy baby boy. I thanked Him for my family. I thanked Him for my life.

I still thank Him. What is happening to my son is a terrible thing. Like many parents, if I could take this burden from my son and bear every seizure instead of him, I would. Unfortunately, it doesn’t work that way.

But even as I question the reason that this is happening, even as I wonder why this is part of His plan, and even though I wonder how He do this to a child, even though He may never answer, I still thank Him for the gift that is my son.

Break On Through

The house had been quiet at night since we left the hospital. My wife and son had been sleeping on our small bed while I slept on the couch in the living room. This temporary living arrangement was brought on by necessity since his elevated loft bed in the basement was not compatible with our new reality, and the stairs down to his room posed a hazard should he have a seizure and try to navigate his way up to our room in the middle of the night.

The first few nights back home, there was little sleep as we waited to see how our son would do. We’d been in this cycle where we would leave the hospital armed with a new medicine and no seizures only to find ourselves back in the hospital a few days later when the seizures returned in force.

But after a week without an incident, in a house filled with silence, my body was finally able to relax. The slender couch with the small “Home Sweet Home” decorative pillow (that I know I’m not supposed to use) were a welcome relief from the uncomfortable hospital accommodations.

With so many quiet nights in a row, my brain resisted reacting to the alarm bell my ears heard echoing through the halls, the unmistakable sound bellowing from my son’s vocal chords that announced the arrival of another seizure . I rolled off the couch, landed on my feet, and raced to the bedroom at the back of our apartment. I caught a glance at the digital clock on the microwave as I passed. It read 5:32, and I noted it so that we could measure the duration of the seizure, the mechanics of counting and measuring seizures having become rote.

By the time I reached the bedroom, the thankfully short seizure was already over and my wife was comforting my son. I laid with them for awhile before returning to the couch. This time, my body refused to relax, and I nervously stayed alert to listen for another seizure, which also came later the same morning, followed by another cluster that required the use of the rescue medicines before they dissipated.

They call these “break through” seizures because they occur in spite of the use of anticonvulsants or, in our case, three anticonvulsants and countless prayers. We’ve experienced enough of them to know what we are supposed to do, which is as terrible as it sounds.  But we stayed home and, given our year so far, that is a marked improvement.